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Saturday, April 7, 2012

Wanted A Bit More..

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

Yesterday...

Mid-spread of the peanut butter on Joe's sandwich...

I stopped dead in my tracks...and did an about face to Joe.

I had been busily preparing breakfasts, lunches, Joe's Daily Diabetes Log, and micromanaging my trolls (my children, I can call them that) hygienic needs prior to our departure for school. Amidst the scuttlebutt, I was discussing next year with Joe. I was lamenting our "good-bye" to his current School Nurse. I was planning out our "care-plan" for next year. I said something like "...and next year we will run it the same...all your care in the classroom...except for lunch."

Shifting his weight, Joe seemed to struggle with the information he was going to share with me.

"Ahhhhhhh...Mom, none of my care is being done in my classroom."

"What? ... For how long Joe?"

"For months."

*a disheartened ----*

As many of you know, I had worked diligently at the beginning of the school year to get more of Joe's care transitioned to the classroom. We had a plan in place. I thought it was being followed. I was under the impression Joe was not missing as much classroom time and I was under the impression that his days seemed more "normal" and "acceptable" to him. In fostering this plan, I had really backed off on my presence in the school. I drop off The Woodchuck to his classroom daily, but that is it. I had not met with the School regarding Joe's care in quite awhile. Things seemed to be going smoothly; I had become complacent.

Perhaps this issue doesn't seem like a big deal to many of you. Perhaps it seems trivial. It's not. It takes knowing the day-in-and-out of diabetes management intimately to truly "get it". During the school day, Joe requires a minimum of three blood sugar checks a day. On a Physical Education day, he requires four blood sugar checks. If he is experiencing lows, he could need many more checks. Each of these checks requires him to go to the Health Office. Many of these checks requires some sort of action: insulin dosing or sugar administration. If Joe is low he must stay in the Health Office for 15 minutes until his blood sugar is re-checked to ensure it is in a safe range. The long and the short of the previously written is that he misses a ton of classroom time.

Let's look at the psycho-social-emotional aspect of this. He misses instruction. He has been made fun of by his peers for not knowing what to do on assignments due to his missing key directions. He misses socializing during snack time. He may arrive to the lunch room late and have to socially navigate his seating arrangement after his peers have settled into their spots. This has been his arrangement for Kindergarten, for First Grade, for Second Grade, and now...apparently...for Third Grade too.

I discussed my concerns with the Principal and the School Nurse. I stated we can continue with the current arrangement as there is only 9 weeks of school left. I did impart this message upon them: I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He was ready for more independence. I wanted to nurture this. I wanted to foster it. I wanted to facilitate a learning environment that wasn't dictated by his diabetes care. My hope is that in the future the psycho-social-emotional aspect of a student's care is considered. Joe is oh,oh so much more than "diabetes".

Joe is an intelligent, independent child. He has an excellent grasp of his diabetes care and I was hoping to foster his growth and development by stream-lining his care in the school this year. I am not unhappy with the school. I feel that Joe is safe there. I feel he is cared for: the blood sugars are checked, the boluses for snack and lunch and highs are given, the lows are treated. I guess I was just hoping for a bit more.

13 comments:

Well hello there Missy! I have missed you tons. And tons. And I have one question for you..Why, oh why, are you letting this ride for the next nine weeks of school? You want it to change, CHANGE IT. And do it now.Tell them what you and Joe want. You want in classroom care, then ask for it and make it happen. Nine weeks is a perfect amount of time to change it, so that this Fall, it starts off on the right footing.There, challenge made to you. :0)

I so get this. I'm thinking of next year, too and what should happen- and it's overwhelming. And we have had some things this year that are not exactly the way I'd hoped. And it's frustrating. And sad. It IS a big deal. A big flippin' deal. ((hugs)). Same same.

I hear you. I cannot tell you how many times I've popped in at school and found Adam in the Health Office....playing legos while waiting out a low. Luckily, his teacher allows him to bring a friend so he's not alone, but it is a bummer. And now that he's got a broken arm, he's in the library alone for PE every day. I feel for him....and for Joe...there is so much that they are missing. :(

While we are not in this place with Our Sugar Babie yet...I find myself thinking about school more and more and how I expect it to look...but I know my expectations will never match what really happens so homeschooling has been on my radar lately. I hope that you will continue to have your voices heard. Joe is definitely much more than diabetes! xoxo

While I'm not sure how helpful this is going to be, here's how it was for me. I did miss classroom time. I missed instruction. I left for lunch early. I walked the length of the school while low to the nurses office. Those are not the things I remember about childhood, and neither do my friends. So, from the kid-turned-adult POV, this will actually turn out to be ok in the end, and he will remember the time they mixed all their gross food together in lunch or the sleepovers or the hockey trophies much more than he'll remember missing those seemingly-precious moments in the long run. :)

From a mom who isn't there yet...these are the very issues that drive me mad and leave me wondering how I will help make sure things are done in a way so that my child doesn't feel like the "kid with diabetes" (as one of the children at his to be school calls himself)! Because as you stated he is so much more. Glad you found out now though so that you can be even more vigilant about it next year.

We used to put in our 504 that DD would leave the class five minutes prior to lunch so she could have the nurse bolus and make it to the lunchroom in time to get a seat. She used to hate being late and not sitting with friends. Worked out until she had Math prior to lunch. Leaving early proved problematic. Getting the handouts did prove difficult at one point, even though we addressed that in the 504 as well. We ended up having her text her numbers, etc. to us over her cell at the lunch table, omitting the nurse but this was not allowed in the lowest grades. What was your plan? Was the nurse to come to the hall outside his classroom? Or Joe do all and text you? Even with the nurse, we had her get on the phone to us directly, we assessed her numbers and okayed the bolus and that got her used to working without the nurse early on. Nurse basically took notes as she is required to do for her records and was there for emergencies. When younger, nurse would verify the bolus number was correct. If Joe wants to bolus you could do it over the phone, then have him hit escape and see how much IOB to verify he gave the correct amount (I know MM so slow to give a bolus...) In order to stop the constant stream of visits to the nurses office, the only way I can think of is to omit the nurse as much as possible, having Joe self manage with the aid of a parent over the phone. It would be great if the nurse would come to him, right outside his classroom, but a lot of nurse's won't do this. As soon as possible, we had DD test and treat in the classroom or hallway outside the class she was in. More dangerous to walk ten minutes to the nurses office when low than to treat where they are. Again, text messages should be allowed so you or the nurse can follow through and keep track of what is going on. The older he gets the more important it will be for him to stay put in the classroom.

This was my concern this year as well. My daughter was losing so much classroom time walking to the nurse for her BG checks and lows (escorted by a friend). Thankfully we have a third grade teacher this year who is great. My daughter checks and treats in the classroom and goes to the nurse when SHE feels like she should (when there is a substitute or for a scary low). The biggest difference this year----her teacher. Her teacher is okay with having my daughter check in class and letting her use the phone to call me or the nurse. The teacher even verifies her pre-lunch BG number and calls it to the nurse so my daughter can go directly to lunch with her friends and sit with them. The nurse calls at the end of the day to make sure she's checked before getting on the bus. We have our fingers crossed that next year's teacher will be as wonderful.

so agree with the psycho social ramifications of this disease. Emma is close in age to Joe (she's 8) and I am finding it tough...she is striving for more independence and i am slowly letting her have it. Seeing as how I am in Canada though, we don't have school nurses and Emma is basically on her own to check, bolus, etc....yes she does have her teacher supervise. I feel your frustration at the school! I hope they smarten up and realize Joe is more than just diabetes too!

My type 1 kindergartner has been creating all sorts of marvelous creative books while sitting in the nurse's office waiting out lows. Fabulous, except she's supposed to be learning to read. I have no idea what do when she gets into the "grades." I'm not sure her school is on board with classroom care so young. Now I want to homeschool but my husband is against it. And so it goes...